New to forum

I came across this forum by accident but something must have steered me here because I was at a time that I really could use some answers and all your posts really helped. I started treatment Jan 8 shot number 9 on Thurs. night with pegintron .4 injection 1x wkly. and 1000 ribavirin daily. I am 51 fem. with 1b probably had the disease 25-30 years. Had 2 biopsies first in 1998 no fibrosis light scarring. 2003 second biopsy advanced to stage 1 slight fibrosis and light scarring. No symptoms of disease but Dr. firmly believed tx was the course.So here I am with all the tx side effects and more. My question is..does anyone have major burning starting at back of throat and continuing down to the stomach. Heavy pressure on chest in middle. No mouth sores or rash or white patchy spots. Doesn't go away after eating or sleeping. My diet is very bland and I drink 150oz. of water daily no soda, caffeine or alcohol. I have tried Tums but only 1/2 hr. of relief. Feels like I can breath fire! What do you all think? Thanks for all your wonderful support and information.

[Galen]

Welcome to the forum.  There are many, many wonderful, knowledgable folks here...  The burning thing, ain't it wonderful?  The probable cause is GERD, gastro-esophogeal reflux disease.  I got it on tx, too, about 2 months in and took Nexium for the duration.  It stops the production of acid. I am now almost 6 months post-tx and still trying to wean myself off the stuff. What may be happening to you is that the acid from your stomach is doing a number on the lining of your esophagus along which is already thinned from tx.  In short, talk to your doctor asap.  Take care

[ts2010]

I had that burning sensation almost all of the way through tx.  Like many of the other side effects, it was something that I just got used to.

There were however days that I had it extremely bad.  On those days I used Pariet 10 mg once a day.  It worked very well for me.  Ask your doctor if they might be right for you.

I believe that there is a limit of 6 weeks for which you can use them.  For that reason I only used them when it was absolutely necessary and learned to live with the burning for most of my tx.

[raheem]

First of all, you better not be in Hawaii because it's too nice there to feel bad! I have had the burning you describe.  I take Zantac, but it doesn't really do a heck of a lot.  I only have 8 more weeks to go and I anticipate (or hope) the burning will stop shortly after I finish.  I do have GERD, and had it before tx but the burning is worse during tx. I've had a sore throat too, but no infection or redness.

[WackyKilkins]

I started treatment 1/9/2004.  I am 1B doing shot 9/52 this Friday - I also after 5-6 weeks of treatment had a "fire" coming from my throat (not to mention from the other end w/loose stools) The meds we are on give you GERD/reflux disease as previous people have mentioned. If not treated can lead to cancer of the Esophagus. I tried lots of small meals but it did not help....Talk to yur doctor. Good luck, I'm here for you if needed.  Kathe

[kathyf]

Hi Sunnyaloha - I had that, too - in the beginning a lot, and then every once in awhile throughout the rest of treatment. I got it no matter what I was ingesting - even just water. I thought at the time it was similar to what people described acid reflux to be like, but I don't know. I just ignored it and chalked it up to treatment. I haven't experienced it since ending treatment. I hope it is just a temporary discomfort for you, but it wouldn't hurt to mention it to your Dr.

Good luck on your treatment -
Kathy

[cindee]

Hi and welcome to your Hep C family!!!!!! I had exactly the sx. you mentioned. My GP gave me some samples of Protonix. He knew I had an appointment w/ my liver doctor the same afternoon. So I showed my liver doctor the samples. BTW when I went back into the exam room, there was a Big poster on Pronotix on the wall, anyway my liver doctor told me it was defiantely acid reflux  and if the samples worked to let him know and he would write me a prescription for them. I did have to use one tablet every day (while I was on tx.) I was lucky enough that my GP would give me samples, so I never had to buy them. I would just go to his office and they would get me soon from the back and bring them to me @ the front desk! They really did work! I still keep some on hand for days that I do have heartburn. All the  different meds we have to take for this or that, adds up. So anything we can get free, really helps. I spent well over 2,000.00, out of pocket on meds and doctors last yr. And you bet ya I turned it in on my taxes!!! Oh yeah I am 4 months post tx on this coming Saturday. I want to wish you the best of good health. We're all here for ya. I was geno 1a w/ 16 or 18 million viral load.  You hang in there, prayers to you and all, Cindee

[jonihs]

I also use protonix, but I started b4 tx. because of my drinking, my gastic acid was a mess.Also I got lots of free samples. It is one of the cheapest also at this time, but still about 90.00 a month w/ out insurance because they have no generic version Of Gerd mecications. The good news, they are coming out w/ generic versions. The bad news, they'll probably go OTC and insurance won't pay for them. If it is pretty regular everyday, I would talk to a doctor, but if it is just occasionally during the day or at night (that's usually when it's worse) try Zantac or Pepcid AC .Good luck, cuz I've had it for years and I got to the point where I'd make myself throw up cuz it felt it a little better.Now I not only don't get the heartburn, I can eat things I couldn't for years(like salsa) and it's such a relief I can't describe it. Welcome to our forum and whatever info or support we can provide, we all will gladly give it. It's been a God- send for me. Don't be afraid to ask anything. I don't think there's such a thing as a "dumb" question.   Best wishes,    Joni

[cindee]

I finally got the go ahead to get my 1st post tx. blood. I am going this Thursday!!!!!!! I finally got thru the receptionist head, that the virus can show back up, 3wks after stopping tx. The day I called she kept saying...well...it's just "our" policy. I said how about I set one up @ pay for myself!? I mean how rediculous to wait 6 months! So anyway PAT ME ON THE BACK !!!...let's get on the ball here!!!!!!! My doctor had told me in the past, he would use me as a case study. We get along very well. So I'll keep ya updated on my test results. I'll be 4 months post tx. on Saturday !!!!! Love, good health: and prayers to you all. I love you!!!!!! honey,OHC,befud.,LvdByGod,TennHepMan,Galen,debbieodo,PeeBee,KIM,.....oh gosh I sound like I just won an  OSCAR !!!!!! LOL Cindee

[sunnyaloha]

Thanks for all your comments and suggestions. I see the P/A on Thursday and I will suggest the Protonix. I eat small snacks every 3 hrs as suggested. I too have for the first time in my life starting eating in the middle of the night As I mentioned the burning doesn't go away, anytime! This is too painful to be able to just live with. Yes I do live in Hawaii and you are absolutely right it is very beautiful here. I'm hoping with the humid weather that I won't develop skin rashes that seem to be a common sx. I've been lucky with my tx so far. No body aches/joint pain mouth sores, or  rash just the headaches. I started Nuepogen last week cuz of low whites I'm hoping this will help me conquer the shortness of breath and racing heart  During the first couple shots I was soo scared but now I'm of the mind set......I'm going to slay you dragon! Yes I am!

[St. Georgie-Girl]

Hello All -

Two articles worth reading - sorry I don't know how to make a link, so cut-and-paste will have to get you there!

http://www.hivandhepatitis.com/hep_c/news/2004/030304_b.html

http://www.hivandhepatitis.com/hep_c/news/2004/030304_a,html.htm

Peace and Strength -

Georgie

[mikesimon]

Way to go girl! Sometimes you just gotta push till they give you what you want. And that's okay - I mean we are the patients after all. Good luck with your results. I'll be thinking of you. Mike

[honey1616]

Hey there!!  I'm sooooo glad you finally knocked some sense into their heads!!  And you will feel so much better knowing and not waiting until May!  I sent you a post way down there but don't know if you saw.  I have been thinking of you and will be waiting to hear on results.  haha I wish I was close and would go with you as I know you are so anxious!  Wouldn't it be cool if Chevy could pick us all up and load us heppers in her car and we could be there to support each other!!

[lollymart]

Aloha Sunny!

Which Island you stay on?  I'm Kauai girl but living in rainy Seattle now with my wonderful (but suffering on tx) husband.  He's also 9/48 and itches constantly.  I'm trying to convince him a trip to Hawaii would do good for his skin, but he said he wants to be healthy and do stuff while he's there and right now he just sleeps and rests.  I told him he could sleep and rest there!  We'll see.  Glad to see a fellow kamaaina!  :)

Lorilei

[CARUU]

I have GERD and have been prescribed 2 Protonix per day (am and pm).  Even with this, I occasionally still have the awful burning in the chest/throat and even lungs.  Pepto Bismal helps, but it takes a while.  One doc explained that Protonix will get rid of acid reflux, but there may still be bile reflux that the Protonix does not work on.  I started carrying the Pepto tablets around, but the stuff in the bottle is the only thing that seems to work.

[audreywald]

It does sound like gerd; and the good news is that there are a number of meds that help. I take Nexium; it also works quite well. Try not lying down for 3 hours after eating.

[Eyedeas]

I'm on asiphex for GERD.  Aloha!

Kim

[LvdByGod]

hi and welcome sunny! i have this acid reflux as well and my dr. prescribs "prevacid" and it works like a charm. i've been taking one a day for 5 years since pre tx days. i know exactly what your talking about with the burning fire all the way down there are no words to discribe it. it's like a volcano ready to errupt!

i don't know if you can just call your dr. and he will take care of it without an appointment like mine did or if you will have to go in. but my dr. told me i could take 2 over the counter pepcid for relief until i got my prescription filled. they were better than taking nothing. i take 40 mg of Prevacid a day and it is a Godsend. the Gi said this was fine to take with hep c and treatment too. i also have had no side effects from it at all just relief.

Cindee, i'm so glad you were able to get your dr. to agree so that you won't have to worry so long. i would still get your 6 and 12 months too if possible. it's your life. take the little victories whenever you can. thank you too for your encouragement as usual. this board would not be the same without you!!! :O)

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[CARUU]

Does it work?  Ever have any problems with GERD while on it?

[cindee]

Hey...ya'll go to the "Thursday Night Dinner Club" I posted an up-date there. Cindee

[Pennywise]

New to this forum, but not the disease. Found out 5 years ago (was gettin' real sick)& know I got it 35 years ago shootin' dope. What an ass! Anyway, I'm an alcoholic & refused to stop drinking but went on interferon therapy anyway. 5 times! I finally stopped drinking on July 15, 2002 'cause I'd gone into stage 4 and was near death. Turned all yellow, puked for weeks (trust me, WEEKS, not days!)couldn't even stand. My hepatologist (who'd thrown me out of the program a year ago because I was drinking through therapy) saw me again, did the liver biopsy & gave me the bad news. "Look" she said "you're a hopeless alcoholic and if you take one more drink you'll die, so the only chance for you is to get into AA and hope you can find the strength to quit". I did, and AA worked it's miracle on me. I'm sober just over a year & a half now. I last went through therapy starting 02/03, this time on Pegasys. I really don't want to scare anyone, as I do feel I must have some kinda "interferon allergy" or somethin' but that goddamn **** made me so nuts & sick it's friggin' unbeleivable. I had the shits, the pukes, the rash, the shakes, the mind goin' down the shitter you name it. But, my starting viral load was 11 million (see: drank & drugged for 37 yrs.) & quickly dropped to around 10,000. I figured I had it licked this time so I suffered through to get the cure. Late last October, I got my PCR results and guess what? My friggin viral load shot up to 250,000! Another words, my wonderful strain of HCV had figured out a way to mutate itself into an undetectable form for even Pegasys. As I was sick as a dog anyway, I stopped treatment. I was so pissed though. I have been trying so hard for 5 years to beat this thing (harder now that I'm not drinking of course) but I just can't. My hepatologist said something new was coming out this year and I asked her if the word "Interferon" would be found anywhere in this new treatment. She said yes, but they'll be giving you a new pill, not Ribavirin. I said I'll pass. I will absolutely positively NEVER go on interferon again! This probably means I'm signing my own death certificate but like I said earlier I think I'm allergic to the damn stuff. I've gone to seminars, know many others with this disease & even had my own website years ago dedicated to this and I've never heard of anyone who suffered as bad as me. My advise, if there's anyone who feels they need it would be to #1- Don't drink #2 Get a GOOD hepatologist #3 Take your shot with the current treatment, Pegasys & whatever pill they're pushin. I am by the way type 1a which is a knock to begin with. But not all 1a's are uncurable. I know many who've been eventually cured, some even only going so far up the treatment scale to Peg-Intron. I've tried Mono, Combo, Intergen, Peg-Intron & let us not forget Pegasys. Someday they will come out with something for people like me I hope. To all of you out there may you find your cure soon! God bless.

Tom

[berlynn]

I hope you check back down here and find this...Please repost this up on a new thread...your story is very importaant to share and it will also give others a chance t welcome you. You sure have been through alot. I am also a 1A and am on pegasys 40/48.This last week or so has been alot harder than any previously...especially mentally..mostly cause I want to sleep all the time cause it gives me a break from the joint and muscle pain that is almost neverending at this point. At least until the pain wakes me back up..hahahahaha. I just wanted to say welcome to the forum. I hope to see you post often. Take care, kim

[Pennywise]

Thanks for your kind comments Kim. When I found this forum & decided to post I didn't realize its structure. I guess I should have started a new thread. I administer a forum at ezboard that's alcohol & drug recovery related and whenever there's a new post either me or my friend Annie are notified & we respond right away. This type of forum I'm not familiar with. I guess I'll try starting a new thread & just copy & paste this message in there. I do hope those afflicted with alcoholism see it because drinking just speeds the disease up & few alcoholics are willing to see that. I know I wasn't, not til "the end". Thanks again for your advice.

Peace,

Tom M.

[berlynn]

Hi Tom....we only get 6 threads a day so sometimes it is hard to post a new thread. If you can't, just add your message to a new thread at the top that has already been opened. We have to do this alot because of the limited number of threads. Just post in the "comment to" that it is a "new question" or "new to forum" and it should get the attention you deserve. Good luck honey...your story is important to share and I look forward to seeing you post and respond to other's questions. Welcome to our FAMILY. Take care, kim